The silent life of disability: Twenty (possibly) offensive questions
This post came to me while my face was pressed up against my toilet’s ceramic underside. I probably should have thought “Ewwww!” or “Must clean more!” but instead my thought was “Three more feet!”
Today’s Topic: the silent life of disability. No, not those parts of your disability you freely share but those ‘other’ moments, incidents, feelings and aspects of your condition/s which are too painful, private or socially unacceptable.
I had woken from sleep with no balance and little limb control. I woke because I needed to pee. I had wormed and flopped this far because I wanted to pee. But there was still three more feet. My home support worker stood in the hall looking down at me. I asked her if any of my support bars were within arms reach. She said no and wandered off (odd, odd woman). Later she would stare down at me and ask if I believed in God.
Why hadn’t someone warned me this moment might arise when I first became ill (That “Evangelical home worker between you and bladder relief” moment)? I did go book hunting after all, to find the of disability, instead finding only accessibility guides and autobiographies looking back years later after the author had reached some inner peace and/or accomplishment. To me, useless. Where was the book; My First Year in a Wheelchair or Down the Rabbit Hole: from first symptom to diagnosis? So I went blog hunting and found lots on being disabled, living disabled or disability issues but almost nothing on “Why do I have explosive diarrhea when I am weak, trembling and having problems with balance?” or “foot dragging and its effect on your toenails.” Where was that intimate information on all the mundane, icky-but-oh-so-frustrating stuff that makes a life (or a disabled life).
You see, this isn’t my first disability; it’s just the first I haven’t been able to hide. In looking back, I realized what almost all those book writers, bloggers and people with disabilities (including myself) had been doing: exercising the freedom to choose how to present yourself, your life and your disability (even while the disability might keep stealing away other choices). Because being brutally open about ALL of your life will have people running away faster than woodland creatures from a forest fire. But oh how I owe those few who revealed.
Kay Redfield Jamison’s book, An Unquiet Mind, helped me understand I was not alone as a person with manic depression who struggled in a professional field where the question “Have you ever been committed against your will?” still showed up on application forms and in interviews. There are parts of my manic depression/bipolar disorder, my current physical illness and my other disabilities that I simply cannot share with anyone except maybe a partner, doctor or care worker. Cannot. Too painful, too shameful, too personal, too humiliating, too much to give away for what I had to pay. That’s my silent life. So yeah, surprise! I have a mental illness; feel free to throw in a “running with scissors” joke, or call someone a ‘loony’ and then glace over to me; others have.
Rolling out of my apartment demonstrates what I am prepared to share with the world (though if you know about a wheelchair cloaking device; contact me now!). Yes, as people with disabilities we are connected through our frustrations, our being belittled, demeaned, looked over, undervalued and our medical and social common experiences. We are also connected because maybe there are some feelings and experiences we can’t share, even to someone with the same condition.
No, we are not our disability. But our disability is more than what is seen, and it often affects and alters some of those little details that other people (or we) take for granted. Those are the details where I begin to understand a condition. Dirty Butter over at has been talking in detail about Parkinson’s and bowel problems, specifically constipation. Parkinson’s attacks the autonomic nervous system which may cause the intestinal tract to weaken and operate slower (ergo, constipation). Dirty Butter says at one point, “I have lost track of how many colonoscopies and endoscopies we have had.” Lost track? I asked different people how many colonoscopies they would need before they would ‘lose track.’ The average was 20. Now, I may only understand 1% of what it is like to have Parkinson’s, but in reading about colonoscopies or having to drink one gallon of the “slippery, salty” GoLYTELY, I have SOME idea that Parkinson’s is more than just Michael J Fox disappearing to do voice acting.
The sad truth is that until people have some clearer understanding of the different conditions and disabilities, they will continue to treat us all the same: “The disabled” (also known as “those who really dislike being called disabled”). And as much as I’m trying, that “they” probably includes me. What I do know is that a disability turns what for others would be the most surreal, horrific, painful, socially unacceptable or biological base into the mundane. During my pre-medication days, my partner’s response to seeing me naked atop a roof was a sigh and “Not again. Didn’t we do this Monday?” Buckle up kiddies, you left ‘normsville’ two stops back.
Okay, I’m hoping this won’t come off as insensitive as the people who ask of Linda and I, “So who plays the guy?” but here are some of the questions I would like to understand:
1) If pregnancy is sneezing out a watermelon, what does an MS cramp or spasm feel like?
2) Did a diagnosis of Chronic Fatigue make you feel better or worse?
3) Why are programs with the word “integration” in them only for people with disabilities?
4) In detail, what would the morning routine of a C-6 quadriplegic from waking to being ready to leave the house be like?
5) What do sight impaired people do with junk mail?
6) What’s the one question you never want to hear about your condition again?
7) How long after an amputation can you feel a phantom limb? Can you move the phantom limb.
8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”
9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?
10) Does EVERY spinal cord injury person go through an “I’ll walk again” period?
11) How long does it take to “get used” to ALS/MND? And do you begin to hate your body?
12) Why do doctors never seem to agree?
13) If you read lips, what is the hardest accent to read?
14) What has your disability made mundane to you but makes other people’s eyes get all freaked out?
15) If you have CP, how will I know when you being sarcastic or making fun of me?
16) Did you ever try to make a deal with God about your condition?
17) What is the best thing about having autism/aspersers? (No, I’m not asking you to go to Vegas with me.)
18) How did growing up with a disability make your family different?
19) Why is the only UK TV license disability discount for sight impairment? And why is it such a small discount?
20) Is there some point when random strangers will stop telling you to “have hope”, “a new cure is coming” or “keep thinking positive?”
I apologize if you are offended; I’m thankful if you would answer. Maybe if I “get it” there will only be 5.99999 billion people left to be educated. What? That doesn’t encourage you?
• Visit
Comments
For my own answer to #9, see my very long rant over at
#13 To a large extent, what accents you understand or don't understand is simply a matter of what you're accustomed to. If you've grown up around people who speak with a certain accent, then THAT accent will seem "easy" to lipread (as a general rule) and all other accents will seem "hard."
That said, though, there IS some difference in how "lipreadable" different languages are. Spanish and Italian, for example, are generally easier than English ... or at least they are if you're fluent in them (my own Spanish lipreading skills are only barely above nil, but then I'm not fluent). My theory is, it's because (or partly because) of the vowels. In languages like Spanish and Italian, each vowel has a very specific pronunciation (and all the other pronunciation rules are fairly straightforward too). In English, because there is so much influence from so many other languages, you have dozens of all sorts of vowel and vowel blend pronunciations so it becomes more confusing trying to match up the motions you see on the lips with what you would see on a printed page.
In regard to #3, over in the United States, the word "integration" is actually more commonly known (I think) as referring to "integrating" black and white students together in the same school. From back in the days when segregation of the races was the legally enforced norm in the south (and the de facto norm in certain places in the north even if it wasn't legally enforced). In the US, I think the word you would want--at least in an academic setting--is "mainstreaming", as in, "those deaf children are mainstreamed in public school."
I'm assuming you want people to answer these here?
Those relevant to me:
2) Did a diagnosis of Chronic Fatigue make you feel better or worse?
Worse - it's a fob-off rather than an actual diagnosis.
6) What’s the one question you never want to hear about your condition again?
Will it go away? Mostly because I don't know.
8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”
All the * time. To the point where even I worry occasionally that I've got 'Chronic Laziness Syndrome' and should just try harder.
12) Why do doctors never seem to agree?
Because they're trained to be supremely confident - they'd have to be, or they'd never be able to take the risks that are sometimes necessary to save lives. But then there are so many conditions that are not yet properly understood, forcing them to guess the answers (they are often unable to accept that the real answer is "I don't know").
16) Did you ever try to make a deal with God about your condition?
Yes, and I want my money back! *wink*
I'll be interested to read other people's answers!
6) What’s the one question you never want to hear about your condition again?
"What's being deaf like?"
I hate this question! It makes you wonder if hearing people can actually hear themselves when they ask this XD
I always have a stock answer for stuff like this though. In this case- "I have no idea, I've never been hearing, therefore I know no different. "
And then smile. And hope they go away =]
13) If you read lips, what is the hardest accent to read?
Ooh, probably any foreign one. Or any british one. Or any accent ;)
The worst are Indian/Pakistani etc. Or liverpudlian. They never seem to open their mouths :( !
16) Did you ever try to make a deal with God about your condition?
Yeahh. But I couldn't hear his answer.
Hope this answered anything,or something at least =]
6) What’s the one question you never want to hear about your condition again?
"Why can't you just snap out of it? Isn't it all in your head?"
Yes, yes, of course I can. How silly of me - why didn't I think of that before?!
16) Did you ever try to make a deal with God about your condition?
Frequently.
Thanks everyone for answering and not coming at me with pitchforks and flaming torches.
Andrea and Kim: a lip reading friend told me "Stop smiling while you speak and mumbling all the time, just SAY the words" - but..but...that's not how the beauty pageant winners do it.
Sully_Glasglow and Vertigo: re 16) - I'm glad I'm not the only one - it would be nice if there was some sort of lightning bolt to seal the deal though - "You make me better and I'll donate what I would have spent on ice cream to charity"
I'm lazy, so I'll answer #6.
"You should try glucosamine sulfate!"
It only works for osteoarthritis, but thank you for telling me how to manage my own disease.
I sympathize on the diarrhea. I get chronic diarrhea myself, but I always manage to at least make it to the toilet. What drives me mad are the constant anal tears and fissures and bleeding. My anus almost always hurts. I'm seeing a GI specialist soon.
Question 16 relies on there actually being a God - which is unproven.
#5 - bin junkmail like everyone else!
#6- i never ever ever want to hear this but most pr4obably will, here goes, "how many fingers am i holding up?" arrghu time to kill!
#8- all my school reports said i was lazy i could do better and stuff like that, some of the stuff i still struggle with now! it happens a lot everyon ethinks im a lazy teenager and not many people get that somethings are to difficult to bother trying to do.
#9- to not leave there cr@p in the middle of the pavement for me to fall over, im talking bikes, buggys, skateboards, mobility scooters......
#12- becaue there are docters, they all think they no everything about you after 5 mins
#14- other people seriously cringe at me applying eye drops in publick and think its gross. that and that i sit with my feet twisted, wich is normal for me but odd for everyone else.
#19- because we cant see the screen atall/very well! and we dont have are own tv programme like the deaf people have see hear.
#20- nope it will allways be that way!
I have bipolar disorder and here are my answers.
3) Why are programs with the word “integration” in them only for people with disabilities?
I thought they were only for mathematics professors or other mad scientists.
6) What’s the one question you never want to hear about your condition again?
If you could, would you press a magic button and make it go away?
9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?
To introduce positive discrimination to employment practices.
To properly resource mental health services and ban Supervised Community Treatment Orders.
16) Did you ever try to make a deal with God about your condition?
No. Unlike many other manic depressives I have never been Jesus Christ.
6) What’s the one question you never want to hear about your condition again?
Why don't you just have a hip replacement?
13) If you read lips, what is the hardest accent to read?
Various asian accents, for me
14) What has your disability made mundane to you but makes other people’s eyes get all freaked out?
My friends: Constant little slights and humiliations from strangers
Random people: Random wheelies for relaxation
20) Is there some point when random strangers will stop telling you to “have hope”, “a new cure is coming” or “keep thinking positive?”
I would love that, but I don't see it happening. Maybe when I'm dead?
2) Did a diagnosis of Chronic Fatigue make you feel better or worse?
Both. At the same time. Recurring. Frequently and persistently.
6) What’s the one question you never want to hear about your condition again?
Are you better now?
8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”
Honestly? This hasn't happened to me. Yet. I hope it never does. But then I don't get out much ;-)
9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?
Slow and steady wins to race.
Or to make kindness a habit.
I'm a T-12 paraplegic, have been for 20 years.
6) What’s the one question you never want to hear about your condition again?
Now that I think about it, nobody asks me about my "condition" anymore.
10) Does EVERY spinal cord injury person go through an “I’ll walk again” period?
I never had an "I'll walk again" period.
12) Why do doctors never seem to agree?
One of the hard truths I learned in my life as a cripple is that doctors are human beings, and therefore idiots.
16) Did you ever try to make a deal with God about your condition?
By the time I had my spinal cord injury - one month after my 19th birthday - I no longer believed in a personal god.
20) Is there some point when random strangers will stop telling you to “have hope”, “a new cure is coming” or “keep thinking positive?”
I live in Texas, USA. Random strangers have stopped me on the streets to call on GOD to heal me. I should have wings by now, but I don't. Then again, a random stranger came up to me one day and told me I was "a lie" and only pretending to be crippled.
Again thanks for the responses, I really appreciate reading them:
Zephyr: yeah, biology sucks - I am trying probiotics for now.
Chris Page: You're right, that was pretty assumptive of me - how about, have you ever tried to bribe a specialist (I have!).
Jemma: #9 - if you can get the sidewalks of any UK city not to have giant poles in the middle of them besides bikes, stands, and everything imaginable, I'm nominating you for MBE. (#14 - now I kinda wanna see the foot twisty)
Bipolar Works: Yes, Supervised Community Treatment Orders seem sort of a "how ignorant or scared are your neighbors" thing - that's medicine?
Tokah: Yes, what is it about wheelies that makes people irritated, is it because you look like you are having fun? I tend to spin while waiting for red lights since I have high(ish) camber and that really freaks out some people.
Rachelcreative: #2 - I think the stupidist thing was when the papers called it "Yuppie Flu" in the 80's/90's which now has put this horrid taint on CFS/ME - while for what it can do to your life it should have some sort of classy but fear inspiring name. #6 - that's a classic one, I get that from relatives, like they are waiting for me to change channels on the TV or something.
Michael G.: #10 - that just must be the ones that make it to newspaper stories around here. Thanks for letting me know. #12 - I laugh, so well put. #20 - wow, both are so offensive, which one irked you worse?
1) Pretty much like any other cramp or spasm I suppose...
6) "What have you done to yourself?" For some reason, because I walk with a stick, people think I must have broken a bone or something. Despite the lack of bandages or plastercasts.
8) All the time. I get really tired of having to say "I can't walk that far" or "I simply can't do that" to people who should know that.
9)Walking too close to me. I need space for me and my stick, or I'm likely to fall over. I also have a large turning circle.
14)Falling over. I'm usually far more concerned about whatever it is I'm carrying (especially if it's an expensive alcoholic drink, for example) than my own physical wellbeing. I'm good at falling. I could be a stunt person.
20)I really, really hope so.
17) What is the best thing about having autism/aspersers? (No, I’m not asking you to go to Vegas with me.)
I would in no way want to go to Vegas -- all the lights, noise and such would put me into sensory overload and possibly into a migraine. Besides, few autistics are math savants (I'm certainly not).
For me, the best thing is not being so mentally bound by conventional social constructs. Sometimes this is a problem because I'm unaware of what "everyone else" seems to know or think, but it also allows me to approach situations from a more unemcumbered, imaginative, and objective viewpoint. Sometimes I can "see through" the social games that a lot of people don't even realise are there.
andrea
6) What’s the one question you never want to hear about your condition again?
"What makes you think you are ____?" (this applies to a couple things. I pass fairly well these days, possibly unfortunately)
9) If you could tell the rest of the population to change one habit (which would help your life), what would it be?
Please stop insisting on talking to me when you have nothing to say. And don't be so loud, and for the love of all you hold dear please no subwoofers!
...You can probably imagine how often people actually comply with any of that.
17) What is the best thing about having autism/aspergers? (No, I’m not asking you to go to Vegas with me.)
The way I see the world. I don't know if I can explain it in any useful way, but the feel of water or the line of a roof against the sky are very satisfying to me.
How about my favorite (not repeated, admittedly) conversation about gluten intolerance?
"This isn't wheat bread though, it's white!"
"... um what do you think it's made of?"
"Flour?"
"Yeah wheat flour."
"Are you sure?"
#6 - I've got a few.
1. "What did you do to yourself?"
Because obviously if you are wearing braces and using a cane, you did something to yourself.
2. "Oh come on, it's just a few stairs; you'll be fine."
Please come see me after "just a few stairs"--it ain't pretty.
3. "Do you really need ? You didn't need it the other day"
4. "Arthritis? Yeah, I have that too, in my " (usually followed by 5)
5. "You should try !"
8) How often do people say they believe your disability but then say or do things which show they think you “just might be lazy?”
Frequently - it happened the most a school.
17) What is the best thing about having autism/aspersers? (No, I’m not asking you to go to Vegas with me.)
I can say things with such preciseness and keep a straight face whilst doing it. I experience things other people don't even notice such as texture. If I am good at something - I am VERY good at it (though the opposite does apply as well).